Participants in the Swedish Heart Failure Registry (SwedeHF) with login rights have access to their own data, ie. data for those who their login covers and can use their own anonymous data.
If the material is to be used for research with a view to publishing the results more stringent requirements are necessary. If access to the entire database is desired, a project application is to be submitted and approved by the SwedeHF Research Board.
If you are interested in doing a research project and use the database generated in SwedeHF, a project application is required to be sent to the Head of SwedeHF research foundation, professor Ulf Dahlström (ulf.dahlstrom @ rikssvikt.se).
The SwedeHF Research Board will approve the project application. The review involves review of ongoing projects so it does not collide with other works, clarity regarding the objectives, feasibility, etc.
After this review the local project manager will be informed of approval or if supplementation is necessary. When notified that the project is approved, the local project manager has six months in which to transact the EPN application and obtain the database.
The local project manager is responsible for ethics application, preferably in communication with the Head for the SwedeHF Research foundation. Ethics application must be written for each project. The Ethical Review Board in Linköping has already approved the main application, of the SwedeHF.
Regional Ethical Review Board in Linköping
c / o Health Sciences Office
SE-581 83 Linköping, Sweden
If nothing is done during this time the project is removed from the website and the area is once again open for other interested researchers to take over.
When EPN application is approved and the anonymous database is obtained the project has now 12 months to show progress. If no progress during the following 12 months, the project is removed from the website and the area is once again open for other interested researchers to take over.
The project leader has to inform the Head of the SwedeHF Research foundation, which variables are, desired who will require the database.
When the project is completed, the database must be resent to the Head of the SwedeHF research foundation for storage and cannot be used for any other type of research than what is stated in the project application.